My mom has just received a dementia diagnosis. Goes for an MRI on Sunday to learn more about type and severity. This has been coming for a couple/few years. My guess is mild to moderate severity, probably ALZ. She's still OK alone and can navigate her life in our house pretty well. But has TONS of issues too. The conversations are often verrrry strange, not surprisingly.
She is also in PT for a outer hip/glute pain and trouble walking. PT is coming to the house twice a week and an aide another 2 days to help her do her exercises since she doesn't do them on her own. The original evaluation said that she has weak muscles and needs to do PT to strengthen them to get rid of the pain. That she'd have to work her way out of the pain. Makes sense to me. But mom does not like to do any work. She would love to be waited on, etc. Not happening in my house.
But OMG the complaining!!! Wants to know when all these people are going to stop coming to the house. I tell her, well you have weak muscles and pain so you need PT so not for quite awhile. She does very little during the day. Sometimes a little light reading. Sometimes folding laundry. Mostly watching TV and moving her papers around. So why is it such an imposition for her to spend a half hour during PT???
Then today she told me that she wants to stop all of it after our vacation 3 weeks from now. I told her she'd end up in a wheelchair and is that OK with her. At this point she just shuts down. I'm so frustrated that she does not want to do anything to help her situation.
Complains about incontinence issues. But refused to go to two appointments in the past. It's gotten bad enough that she's asked to go and I booked a appt and she IS going, if I have to drag her to the car.
Complains about being tired all the time. Yup. Diagnosed with severe sleep apnea. So she doesn't get good sleep, ever. But could not or would not use the CPAP. I helped her a lot and got her set up every night but most nights she'd take the mask off after a short amount of time and not be able to explain why the next morning. I just tell her that she has severe sleep apnea and you're going to be tired every day.
I know with dementia that these things are magnified. But she was like this before. She always thought that waiting to see how she felt tomorrow was a good plan. I am soo not like that and it just frustrates the heck out of me. She just let old wash over her and did not fight it. Now I'm feeling very much like I'm not doing more for you since you refuse to do anything to help yourself. Don't do PT and can do less? I don't want to do more to fill in the gap. So, I'll be hiring someone (with her money, of course) to do the things that she can no longer do. First hired a cleaning lady since she couldn't keep her room and bathroom clean or change her sheets. Now hiring an aide to help her do exercises that she won't do alone. I'm sure there will be more soon.
a lengthy journey of rehab, home, hospital, respite over 16 weeks. Currently in respite and not liking it one bit, but mum frazzled and frankly scared after the last seizure,
his carer said he needs stimulation, so I totally agree with Helen on that lack of use of body and mind is speeding up any dementia (my dad is waiting for an mri to determine)
he’s registered blind, but can still hear. Won’t have the radio on won’t have the tv on. I left and he broke down, it is the hardest time/experience for them and for us, none of us wants to see any living being suffer, yet if them themselves refuse to do anything what do we do. I’ve never felt so helpless
he got tired doing his physio, fed up with drinking to flush out a UTI and keep his kidneys going. Gigabees post reasonates so much…. My mum bless her buries her head (she drives me nuts but I love her)
we try everything we can and we keep trying. None of us went into this willingly so we should get all the help we can: keep getting the help in againx and I wish you all well xxx
MJ, I don't get the impression that the OP and most of us here are not showing compassion. We are just worn out by trying to do our best for people who will not do - and in some cases have never done - their best for themselves, for whatever reasons. In many cases, the lack of use of their brain and body may well have contributed to the dementia that now makes their life even harder, which is in no way our fault. If we didn't care about them and want to help, we wouldn't be on this forum trying to obtain a bit of moral support for a long-term problem for which we have no training and maybe not enough mental and physical strength.
Againx100, this is exactly my situation too. My mother (87 and with no serious health conditions) resents and rejects almost all attempts to help her make more of her life and complains about hating the AL where she lives, saying she is just 'sitting waiting to go'. We have tried physiotherapists to help with the pain of weakening underused muscles, going to the doctor for tests for her early dementia, hiring a cleaner and carers and taking her food to tempt her to eat. We used to take her out, but she found fault with whatever we did. She hates being stuck in her apartment (she gave up walking owing to vertigo although there is nothing physiologically wrong with her legs), but when we went to take her to our home for tea on Saturday instead of lunch, she wouldn't come.
This relentless negativity over five years, added to our historically poor relationship (she seems to having narcissistic traits) has resulted in my being on anxiety medication and fearing the future. My husband is 65 next month, with health concerns of his own - what if Mum lives to 92, like my grandmother?
After reading so much on this forum, I've come to understand that sacrificing one's sanity is not healthy for anyone; especially the one who forfeits her happiness trying to make someone else happy. Old age, physical pain/limitations and the dreary darkness of mental illness is NOT a happy place for anyone.
You said she shuts down after you mention she will end up in a wheelchair. Does she ever have any thoughts about that at all?
She sounds a lot like how my mom is- won't do anything about improving her situation- and because of it she is in a wheelchair. Complains about her knees, etc. but has not nor will consider knee replacement. Does not want to follow through with her exercises that PT gave her. So here we are. I may hire an aide for that myself. She will listen to them- she gets very angry with me when I try to get her to exercise and even when I get her to do things herself sometimes. My thought is maybe she's at the point where she just wants to be left alone and do nothing. 🤷♀️ Maybe your mom might feel that way as well? It is very frustrating.
My mom has been at the point for a long time where she wants to be left alone and do nothing. But what a horrible choice! I would feel like a horrible caregiver if I let her take that downward spiral path. Especially now that she has dementia. Of course, I know at some point, I will have to give up and let her do nothing. I will resent it, but it's coming.
It might be best to take a more relaxed approach to her health and lifestyle decisions:
1 - Is the issue "life and death"?
If so, then make the decision that leans heavily to "life"?
2 - Is the issue one that leads to disability?
Help her to see the long term effects of options. Try to narrow options down to 2-3 choices and let her choose the option to take.
3- Is the issue one that causes "hurt to others"?
Make the decision that is kindest for all involved.
Explain to her that "we always need to be kind to others, even when it might be difficult for ourselves".
4 - Is the issue about "lifestyle"?
As long as it doesn't cause safety or health problems, let her decide.
I'm a type A person so taking a more relaxed approach will be a challenge. But life is already a challenge, so maybe I should tackle it. Maybe when we get to the other side of this PT problem and she has her strength and mobility back (or tries to tell me how she wants to quit), I can tell her more about where this poor choice is going to lead her. I did tell her she was going to end up in a wheelchair. What I didn't tell her was that that would also mean a nursing home. I know she does NOT want that.
(I can’t believe I’m in an old people’s home - she has a private flat with access to communal areas at 84), but happy - ‘it’s lovely here, they are wonderful, there are lovely people to talk to, we have fun’. It was only whilst packing her up and clearing her old flat that I realised she must have had dementia for YEARS! Officially diagnosed with mild dementia 18 months ago, but researching it, it seems she must have been suffering WAY before then. It’s been sad to see fully how many things have been completely forgotten about. I had to ask her where toothpaste and shampoo were, her underwear had to be binned, she was using a towel I remember her having when I was a teenager. Everything has gone to pot. She has gone downhill rapidly and I was saying the same as you just 5 months ago. She ‘washes up’ her pots, but they are dirty when she’s done it, she’s forgotten she needs a haircut - no longer wears makeup - just lost interest.
Now she’s moved she feels safe and has support to shower, dress, eat, medication, laundry - everything I was feeling exhausted and resentful about. Get the professionals in and let them handle the care - they are the experts. Then you will be able to have a daughter/mother relationship again.
I think they often have dementia longer than we suspect. They can cover it up pretty well. I can imagine my mom's early dementia being soooo much worse in 18 months. She's gone downhill a lot in 6 months. It's quite a rollercoaster.
I love having some helpers. Mom doesn't really love it. She's good with them when they're here (people pleaser) but then asks me "when are all these people going to stop coming here??". Umm, basically never.
Have you been able to resurrect a "normal" mother/daughter relationship with her? I am wondering if it is possible, at least for me, after all the hard times living together with all the issues that are raised as they decline?
Good luck.
I have thought about telling her that if she's not going to go to the doctor and do something to fix whatever issue she's telling me about, then please don't bother telling me about it. Not sure if it would work and if it would shut down too much of her ability to tell me what's going on in case it's something new that actually needs to be addressed.
Sorry your mom forgot how to walk. That is pretty advanced and is just incredibly sad. I will not be able to handle that level, no doubt. As her condition declines, I expect to hire more in-home help until that gets too expensive and/or she just needs to much care and then transition to living in a facility appropriate for her issues at that time. I need to get in an app to the SNF down the street from us, a few miles.
It definitely gets worse over time. It's degenerative and untreatable. So cruel.
Healthier but miserable and feeling driven and disapproved of is not how you want your mother to be.
Those aides who you've hired to encourage her exercises, how are they getting on with her? The coaxing/threatening/encouraging bit is their job, and that's what she's paying for (excellent decision on your part) - are they are doing it, do you think? If so, you should, if you look surreptitiously and discreetly without your mother's noticing you, begin to see the green shoots of returning motivation. Any sign?
The aides are getting along well with her. She likes them. She doesn't like doing her exercises but likes them. She's kind of a people pleaser and I think she likes the extra attention. If green shoots of motivation appear, it would be a miracle. She has never had any drive to take care of herself.
I suggest you read this 33 page booklet (which is a free download) which has THE best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.
Understanding the Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
She also has published a workbook entitled, “It Isn’t Common Sense: Interacting with People Who Have Memory Loss Due to Dementia.” For people to understand that reality and context as perceived and experienced by a person with dementia, is altered by the dementia; and, that their reality and context is continuously changing as the dementia progresses, requires learning and an attitude shift; it is not ‘common sense.’
Here is a list of useful tips from her e-book I found to be excellent:
The “Dont's”
· Do not reason and argue
· Do not demand that they reason or problem-solve
· Do not demand that they remember
· Do not demand that they get their facts straight
· Do not correct their ideas or scold them
· Do not reorient them
· Do not think that they are being uncooperative on purpose
· Do not think that they really do remember, but are pretending not to
· Do not use a “bossy” dictatorial attitude in care
· Do not act with impatience
The Do's
· Enter into their frame of reality, or their 'world'
· Be aware of their mood or state of mind
· Use few words and simple phrases
· OR use no words, just friendly gestures and simple motions
· Do everything slowly
· Approach from the front
· Wait for a slow response
· Constantly reassure them that everything is 'OK'
· Keep people with dementia comfortable 'in the moment' - every moment
· Maximize use of remaining abilities
· Limit TV or radio programs which they may feel are frighteningly real
· Maintain privacy
· Provide a safe physical environment
Language Needs
· Use short words
· Use clear and simple sentences
· Speak slowly and calmly
· Questions should ask for a “yes” or “no” answer
· Talk about one thing at a time
· Talk about concrete things; not abstract ideas
· Use common phrases
· Always say what you are doing
· If they repeat their question, repeat your answer as you did the first time · Give them a longer time to process information
· Wait patiently for a response
· Be accepting of inappropriate answers and nonsense words
· Speak softly, soothingly and gently
Care Needs
· Recognize that receiving personal care feels intrusive
· Reassure with your tone and manner
· Do one thing at a time
· Talk through the care “play-by- play”
· Be aware of your body language and use it to communicate relaxation and reassurance
· Be sincere
· Use a soft, soothing touch
· Be aware of the individual’s unique triggers
· Be aware that a person with dementia may not accurately judge whether a situation is threatening to them
· They may respond to fear, pain or anxiety by defending themselves with what we call “aggression”
· If they become distressed, stop immediately and allow them time to calm down – don’t try to restart the activity right away
You need to change your behaviour to adapt to the dementia because the person with the disease cannot.
Another good book is Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer's, by Diana Friel McGowin. Learn all you can about AD/dementia b/c knowledge is power!
Also plan for the future when you may no longer be able to handle mom at home & Memory Care may be your best bet.
GOOD LUCK!
I do know of one really good MC in the area. My friend's dad was there and I helped her move him in and then out (when he ran out money). In your experience, do you think it would be reasonable for the progression to be from being at home with some aides and then go into memory care? And then I guess when her money runs out, she'd have to transition to a medicaid nursing home?
This reminds me that she is now older than both her parents were when they passed, 6 years older than my dad, and my dad's parents as well. Her mom's siblings lived to be a bit older than she is now, all with dementia as well. I always assumed my parents wouldn't live too long given their parents all dying in their mid 70s and that they didn't take good care of themselves. I am hoping to break the trend by taking as good care of myself as I know how. We'll see how that pans out! LOL
My mom loves to be babied and coddled and is a people pleaser (except with yours truly). So having professionals work with her is the only way to keep her going.
When PT says she's done due to meeting goals and/or not making progress, I am hoping to get her into an Age in Motion class at the senior center, which is unfortunately a half hour drive from here, but the closest viable option that I know of. Maybe the classes at the Y are a teeny bit closer so I'll figure it out but she needs to be lead as she doesn't like it and will never exercise voluntarily.
Thanks again and good luck with your mom.
I wish I had quit trying. And that’s my advise to you. Quit trying, she won’t and you can’t do it for her.
Please read my response MJ1929.. I felt like all we ever did was argue and to what consequence. My mom went from independently living in a mobile home , to AL , then to a MC. She does nothing to help herself. But still asked the dr for PT 4 months ago.. I tell her she will end up in a nursing home, she does not care, and is lazy.
I know your frustration
Not for Sissies this whole thing of loss of one thing after another, mobility, joints, continence, mind. And when we have the mind being uncooperative as well?
I think Againx100 is moving into againx1000, and battling all of this? Well, think back to our parents battling US when we were in our teens. It just won't work, and the added frustration for everyone involved will be dreadful.
I too, can imagine the frustration. But not everything can be fixed.
I am kind of concerned about one single statement here and that is that the OP believes that all this can be "easily improved". I think there may be some magical thinking in that belief.
I see a lot of complaining in the post, so maybe you aren't as different as you think. 😉
I have gone thru the same exact thing. My mom continues to ask for PT .. has been repeatedly fired from it for non compliance. Same argument about doing the exercises , “mom Dr said if you don’t do the exercises you go backward “her reply .. “then I will just go backwards “ My mom quit walking to the dining room. Wants to be waited on. Now memory care is asking for a lift chair. Going down the road I strived , and argued over with my mom. I hate she doesn’t want to help herself, or is to lazy to.
I have now after years of this , decided I’m not going to argue about it anymore…. not moving her body, not putting her feet up as the skin is weeping from edema, not letting staff put on compression stockings, wearing her hearing aides so you can have a conversation, staff frustrated from screaming at her to communicate, not walking to dining room as her dr instructed, I too could go on and on…
Once a complainer always a complainer. They are called Debbie Downers. I had a friend like this. When she complained, I'd suggest a solution. Always a reason why the solution wouldn't work. One was an application for the Senior bus. She was under the age limit but disabled which they excepted. When she was complaining she couldn't find a ride, I asked what happen to the bus? She said she was turned down. I doubt that, she just never applied. Now if I had gotten her the application, had her fill it out, take it back and follow up on the progress she probably would have liked that. Sorry, my new slogan is "I am here to help people find the way, I am not here to be the way"
Her bedroom was getting problematic. She has a dustbuster and used it sometimes. Swiffer sweeper too. But she eats in her room and kept getting ants. YUCK. And couldn't change her sheets - well, technically could but would take a full day to do it. And her bathroom?? Let's just say I NEVER use it!!! So, a cleaning lady is a necessity!
LOL she is totally a Debbie Downer! I'll share that with my sister - she'll get a kick out of it too. Wow, I am stuck in the same thing you describe about your friend. I am always offering solutions to mom's complaints. But does she want to do any of them? Nope. And offers ridiculous excuses. Maddening. OK, she has dementia but it still drives me batty and has been going on for years.
We used to have many posts where people complained that elders were living too long. How Doctors were extending their lives past the point they had any quality of life. The US has an average life expectancy of about 78 I think it is. Your mom at 75 would be near that. Perhaps she is tired.
The PT before a vacation sounds good. Hopefully she will have more energy and both of you will enjoy the break in routine. I think you are doing good to keep her active so she can have the best life possible. It is stressful watching our loved ones decline regardless of their age. Recently there was a post re an 87 yr old who didn’t want to go to the doctor for BP meds. Adult children as a group seem confused about what they want. Extend the life, don’t extend the life. Maybe againx100 you might find some benefit from reading “Being Mortal, Medicine and What Matters in the End” by Atul Gawande. There comes a point where a person might be ready to relax into old age and not feel compelled to fight it without it being called depression. How about reality? Since you know your mom has dementia, it might be a good time for you and mom to discuss Atul’s five questions. Or it may be later than you think.
Here is a link to an interview where he is discussing the questions he feels every elder deserves to discuss with their doctors and family.
https://www.nextavenue.org/atul-gawandes-5-questions-ask-lifes-end/
Your mom is lucky to have you.